UPDATE, 4:50 p.m.: CHOP’s press office just responded to my request for comment with the following:

“The Children’s Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability.”

According to CBS Philly, Chrissy Rivera says CHOP has contacted her about discussing her daughter’s case further.

———

Last Thursday, Chrissy Rivera vented to the Internet. She recounted the story of what happened to her at the Children’s Hospital of Philadelphia on January 10th, when a doctor in the nephrology department sat down with Rivera and her husband, Joe, to go over the logistics for an upcoming kidney transplant their daughter, Amelia, was due to undergo.

Amelia was born with a condition called Wolf-Hirschhorn syndrome (WHS), a diagnosis in which a person is missing part of a chromosome and suffers a variety of birth defects, including developmental retardation. The lifespan for people with WHS is unknown, as some die in infancy and some live into adulthood. The condition occurs in an estimated 1 in 50,000 births; some 35 percent die within the first two years of life.

The Riveras received Amelia’s WHS diagnosis three days after she was born and found out soon after that she’d need a kidney transplant down the road. That was nearly four years ago. Just before Christmas, they learned the inevitable had arrived: It was time to get the transplant on the books.

According to her account of what happened on Thursday, Chrissy and Joe were ushered into a conference room where they met with Amelia’s nephrologist and a social worker. In her own words:

[The doctor] gets about four sentences out (I think it is an introduction) and places two sheets of paper on the table. I can’t take my eyes off the paper. I am afraid to look over at Joe because I suddenly know where the conversation is headed. In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV.

… I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”

The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.

I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”

“Yes.”

The story goes down hill for the Riveras from there, with the doctor, according to Chrissy, saying that Amelia’s quality of life renders her ineligible. It boils down to this: Chrissy says the doctors won’t perform the needed procedure because her daughter is mentally retarded. The doctors on the transplant team, she says, won’t change their minds.

Since publishing her account on the blog Wolfhirschhorn.org, where she blogs regularly, her post has received 399 comments (and counting). A Facebook page and a Change.org petition were started on Amelia’s behalf; so far, the petition has over 14,000 signatures. And people have turned to the Children’s Hospital of Philadelphia’s own Facebook page, where they’ve been leaving comments, like this:

I reached out to the hospital for further comment this morning, but haven’t heard back either way yet; I’ll be sure to update this post once I do. As of this writing, CHOP’s Facebook post has 147 comments, some in support of the Riveras and some in support of CHOP.

For what it’s worth, a 2006 study from Ohio State University found that “the one-year survival rate for people with mental retardation who received kidney transplants was 100 percent, and the three-year survivor rate was 90 percent”—on par with post-op statistics for the general population. The study looked at 42 cases of kidney transplants in mentally retarded patients.

What do you think? Should a person’s disability—or quality of life, or prognosis—come into play when deciding whether or not they qualify for a procedure or treatment? Does it make a difference if the patient is a child? Tell us your thoughts in the comments.

Be respectful of our online community and contribute to an engaging conversation. We reserve the right to ban impersonators and remove comments that contain personal attacks, threats, or profanity, or are flat-out offensive. By posting here, you are permitting Philadelphia magazine and Metro Corp. to edit and republish your comment in all media.

Sheral Jackson

ABSOLUTEY NOT!!! Obviously each case is different but in Mia’s case, she has one of the best support systems I’ve ever seen, her parents are amazing! Mia is “one of the kids”, she brings light & joy to their family every single day! There’s a video on my page which shows you how wonderful Mia’s quality of life is! She loves unconditionally, she’s not mean, she doesn’t hate….I’m sure you would be hard pressed to find many kids, ah heck, grown people who have those traits! Mia’s quality of life is NOT a factor, she has a great life!!! She has a great family!!! Oh and by the way, CHOP has been deleting comments from their page and not because of profanity!!! SHAME ON THEM!!

Jeanne

You stated, “for what it’s worth, a 2006 study from Ohio State University found that “the one-year survival rate for people with mental retardation who received kidney transplants was 100 percent, and the three-year survivor rate was 90 percent”—on par with post-op statistics for the general population. The study looked at 42 cases of kidney transplants in mentally retarded patients.”

This study is based upon children with a diagnosis of mental retardation. The child in question has many more complex medical conditions including HIV and HVC and WHS. This study does not accurately support this particular case.

katie

this child does NOT have hiv or hepatitis C. these two conditions were included on the list of conditions that would make one ineligible for a kidney transplant, but they were not highlighted for the young girl in question. brain damage and mental retardation were.

http://www.extremeparenthood.com Sunday Stilwell

As Katie said Amelia does NOT have HIV or Hep C. I have personally confirmed this with Amelia’s mother, Chrissy.

Jeanne

Sorry – I misunderstood the mom’s blog, and her mention of HIV and HVC on the sheets of paper. That being said, this child has been diagnosed with WHS, and we do not have the benefit of completely understanding her diagnosis or prognosis, nor do we have the ability to hear the hospital’s version of this story due to patient confidentiality.

txrus

If one reads the full spectrum of disabilities a child w/WHS can be born with, it is entirely possible that the child in question is too severely handicapped, w/too many other birth defects, to be able to endure a transplant. The medications this child would have to take for the rest of her life, & the side effects that come w/them, could cause additional problems. It is important to remember that we, the public, only have the mother’s side of this story-there is another side we don’t know. Transplant professionals grapple w/the very real problem of not enough organs for everyone who could benefit from a transplant every day & take their responsibility to be good stewards for those scarce national resources very seriously. There is no point putting the child & her family through what is a dangerous operation, for her to lose the new kidney in a short time span-it is not fair to the child nor is it fair to all the others who could benefit from that new organ for a longer period of time. It is also important to remember that a kidney transplant, unlike a heart/liver/lung transplant, is not a ‘live saving transplant’-a person w/renal failure has dialysis as a treatment option, even for long term. Finally, if the mother is this unhappy w/the transplant team at CHOP, she absolutely has the right to take her child to another transplant center for evaluation, which might be a more constructive use of her time instead of ranting on the internet.

http://www.extremeparenthood.com Sunday Stilwell

TXRus-

When Chrissy Rivera wrote about her experiences at CHoP she was not merely “ranting”. She was looking to make a change both for child and for the broader special needs community. Chrissy wants to ensure that no other parent EVER has to sit across from a medical professional and be treated so disrespectfully for advocating for their child’s care.

Furthermore, Amelia’s family is planning on donating the kidney from within their own family. They are not looking to place their daughter on an organ donor waiting list which makes your point about the organ going to “others who could benefit from that new organ for a longer period of time” a mute point.

If you read Chrissy Rivera’s previous 2 blog posts that were written before the day of this meeting you will note that Amelia has been on track to have this transplant since she was born. Children with Wolf-Hirschhorn syndrome (WHS) need this surgery within the first three years of life in order to continue living. This meeting was supposed to be about mapping out the next steps towards getting the transplant completed.

And before you ask…yes, I do know the family personally and I have confirmed these facts with Chrissy Rivera myself.

Sheral Jackson

Thanks! I was partically offended by the “ranting” comment as well! Because quite frankly, if it were their family, I’m sure they would be “ranting” too!!! I wrote my reply 3 times to get my anger out of it!

Sheral Jackson

Couple facts which you obviously did not know. First, the family is not asking to be put on the list, they are going to use living donor. Secondly, the family is extremely aware of the WHS & it’s affects! I’ve never actually meant a more informed set of parents! And finally, the PARENTS, not just the Mother is unhappy with the treatment by the doctor & social worker who they spoke with. They are CHOP lovers & honestly I think that is why this hit them partically hard, that this doctor & SW were so heartless! The ONLY REASON they were given for not doing the transplant was MR! That is unexceptable!

http://www.healingandempowerment.blogspot,.com Phil Dzialo

No one has the right to judge the quality of life of a disabled person; no one has the right to ever conclude that a life is not worth living, unless you were Josef Mengele. The decision is outrageous, violates the Hippocratic Oath and sets s precedent which could turn back the disabilities rights movements years….equal but not really. CHOP should be ashamed in this case, although I am sure it has done much good in the past. Criticism is directed at this ONE decision.

No one is saying that, Joseph — especially because, in this case, the parents are not asking for the child to be on a transplant list but are willing to find a donor from within their own, very large family. The crux of the problem is that the doctor is refusing to perform the surgery on the child only because she is intellectually disabled. And were she to need an organ from a donor, she should not be denied solely on the basis of her cognitive disability. To do so is to tell her that she has no right to live because she is disabled. It’s discriminatory.

Sheral Jackson

Joseph, I’m saying NO ONE has a right to deny someone a life saving procedure soley based on their mental capacity! That is EXACTLY what they were told!

http://www.journeyswithautism.com Rachel Cohen-Rottenberg

No one should ever be denied life-saving surgery on the basis of disability. To do so is to devalue the lives of disabled people and mark them as having “life unworthy of life,” just as the Nazis did.

I’ve written a piece on the subject from an ethical and disability rights perspective:

By the way, the term is “intellectually disabled,” not “mentally retarded.”

http://timetolisten.blogspot.com Kassiane

The doctors don’t know Amelia’s quality of life. They’re comparing her life to that of someone “normal”. Different and less are different things, yet they’re saying that different life = less worthwhile life.

That’s not true, & whether someone’s life is worth it isn’t their call. Only the person living the life knows its quality. It is unacceptable for someone who took the Hippocratic Oath to say “well actually….this one doesn’t matter”. Not acceptable.

Kristin Halonen

Very thoughtful commentary and I appreciate the reporting.
I noticed a word though that we should reconsider using to describe people with disabilities: That word is “suffer”–“…suffers a variety of birth defects, including developmental retardation.” People with disabilities don’t necessarily suffer with their condition–it’s through our eyes and judgement that we call it suffering. My daughter “lives” with Down syndrome, she does not “suffer” with Down syndrome.

http://www.kidneysandeyes.com Julia Roberts

No! If it had been an issue, my two children may not be here today. My kids are developmentally delayed, use special education, therapy services, have vision disorders and one has mental illness. They deserve a chance at life like their typical peers.

This is a slippery slope to selection criteria being completely subjective…too poor? Not enough long term potential in earnings? Not smart enough? Pretty enough? Not perfect enough?

Erin C

I have a daughter with WHS. This scares me! I believe in life from conception to natural death and within a lifespan if it needs a push, a little help, a KIDNEY then so be it. For all abilities. Everyone deserves the best quality of life possible no matter their cognitive ability. I’m sure CHoP is wonderful, just as CHaD was when we lived in NH and I am sure CHoA is here in GA, and maybe the blame doesn’t need to be put on CHoP. It was the Dr and SW’s insensitivity that caused this backlash. HOWEVER, he said that the board at CHoP would deny the transplant, the Dr that practices at CHoP denied the transplant on behalf of the hospital. So in my eyes CHoP is just as guilty as the Dr and SW.

Marathongirl

“I believe in life from conception to natural death and within a lifespan if it needs a push, a little help, a KIDNEY then so be it.”

If you are talking about conception to natural death, a little help is not a kidney transplant. A little help is antibiotics for an infection, maybe a blood transfusion or some other medical care…but a kidney transplant is NOT a little help. Especially from a living donor. It is major surgery, for both parties involved. I’m not commenting either way in favor or against for the one in this article, but when you claim you believe in life from conception to natural death with a little help, that doesn’t fit in this instance.

http://www.caringbridge.org/visit/tylersincavage Amanda Sincavage

CHOP also denied my son a Liver in 2008 stating he had a poor quality of life. They allowed him to get very sick refusing my every plea to get Tyler the transplant. My husband and I were both blood matches still NO. We were blessed to contact the AI Dupont Childrens hospital…..Tyler had the liver transplant recieving a piece of his dads liver. Tyler is still here and smiling today 3 years later……his physical impairments are still here….but his liver is doing wonderful..

Kristin Halonen

Ahhh…wonderful!

http://www.whosays8isenough.org/ debi9kids

that is wonderful to hear!
Thank God there are some institutions that actually care about the child and not just the $$$

http://www.a-part-or-apart.com Jane Strauss

CHOP is not God. CHOP is rationing health care based on disability. As a person who has refused to patronize other institutions that tried that with my son, I strongly feel that they should then be getting no Federal funds or Contracts if they do this, as they are clearly in violation of the ADA. Remember, the Nazis started their reign by rationing care for disabled people, and tuned up their killing machines on the “mentally retarded.” Is this repeating in the USA? Say it ain’t so!

Kate

The only way Amelia should NOT have this transplant is if there are underlying medical factors which would disqualify any other patient from having a transplant, regardless of mental disability.

Period.
Hell, she could have one of my kidneys if I were a match for her.

http://www.whosays8isenough.org/ debi9kids

Thank you SO much for continuing to put this topic in the public eye.
I am mortified that in this day and age that a child’s developmental status would be reason enough for denial.
Sickened.

My youngest son is severely disabled and the thought that he might one day need life-saving surgery and be denied due to his disability makes me cry.

I pray that society will wake up and stop allowing “the system” to play God.

http://www.innovativestrategies.us Robert F. Hickey, Ph.D.

Un fortunately this incident is not unusual in the US human organ transplant industry. I am the grateful recipient of an altruistic, non-related, living, kidney donor transplant. After spending 30 years in academic medicine I was stunned when after going through 8 months of testing and as my donor and I were on gurneys waiting to go into our respective OR the surgery was stopped! My transgression: I had advocated for myself and found a donor. Onlt through local, national, and international media attention did I get that life saving surgery 2 days later in October, 2004.

Since that time I have been researching the transplant industry in the US. After 7+ years it is clear the US transplant industry is broken and corrupt!

Last year a single mom in Philadelphia and her living donor went through 7 months of testing. They were a match! Albert Einstein Med Ctr said it was unfair she had advocated for herself and stopped the surgery. Today she still has not been transplanted and still has to do dialysis 3 times weekly.

Last week a lady from Dover, Delaware called me. She to had gone through testing with her prospective donor, a retired, female US Marine Corps Master Sgt. Then the transplant center at Christiana Care Health Services denied the surgery saying it wasn’t fair she had advovated for herself in finding a donor.

She had done nothing illegal or unethical. She and her donor had been completely truthful with the unethical leaders of the transplant team at Christiana Care Health Services in Delaware. It has also happened with a 35 year old lady in Buffalo, NY who went through testing with her donor. They were a match! Strong Memorial Hospital in Rochester, NY refused the transplant surgery!

In little Adele’s case, she and her family have become victims of a discriminatory and subjective system. If you are different the decisons will be subjective rather than objective! She is a vibrant little girl! Her family loves her. She is the joy of their lives! Dr. Baluarte at CHoP should be taken to task for this discriminatory decision and held accountable.

That will happen! Complaints will be filed with the Federal Department of Health & Human Services, state authorities, and the Centers for Medicare Services with oversight of all 255 transplant centers in thsi country.

I am profoundly disturbed that your site would even post this as a *question*. How is this up for debate? Do you realize this is exactly the kind of ‘rational discussion’ they had in Nazi Germany? Why not ask your readers “Do you want medical policies based on eugenics?” At least then we are not fooling ourselves. Shame on you for sensationalizing this serious, discraceful, life-and-death situation and manipulating it into a benign opinion poll.

http://thegoochman@frontiernet.net Harry

Clearly, there is a misunderstanding here! While I see how this could be a frustrating situation to the Rivera’s, CHOP is a top notch hospital and certainly will not respond in detail due to HIPPA regs, to this allegation. Every candidate should be afforded equal treatment but certain criteria has to be met and the issue of quality of life as well as longevity has to be considered. I have nothing negative to share regarding the lengths CHOP will go to save a life as I have experienced this first hand with regards to my eldest child. God Bless the Rivera family and I hope this matter is subsequently looked into as the surgeon’s presentation certainly could have been a little more subdued; people rarely handle bad news in a good way, if ever!

Bob Mack

I have found many doctors to be disconnected with the human side of medical care. They’ve seen so much that it shows in their behavior. They forget where they are and actually joke about how fruitless it is for having compassion. I know some incredible doctors, but have met some pathetic souls who have somehow “slipped through the cracks” and entered a profession in which they are misplaced. What do you call the student who finishes last in his/her class at medical school? A: Doctor

Lisa

Why is this even a question for debate? The fact that she has mental retardation should not preclude her from getting a transplant if a transplant is what is medically necessary at this time. Decisions such as this should be based on measurable quality of health outcomes not on assumed quality of life.

Lawrence Rooney

If people were allowed to sell their own organs, the sick could be well, the poor could have more money and I wouldn’t be bothered with this nonsense. That’s why I blame the government, keep your hands of my body.

I’d like to point out that everything being reported is “alleged”. Not a single one of us was in the room with the Dr, social worker or family. And until someone can somehow know EXACTLY what was said in that room- we should refrain from passing judgements on the hospital and the parents- in either direction. I’m sure there is a very long list of criteria that must be met to qualify for a transplant. Drs don’t come to the decision lightly. So keep an open mind and heart and wait for the full truth to be told. What ever happened to innocent until proven guilty?

carrie

so this little beautiful girl could receive a kidney from a loving family member and live a happy loved life and your typical child could wait on a transplant list get a transplant and get hit by a car playing out side or decide to turn into a crackhead but thats ok because right now in their life they have no disabilities but could die or ruin that kidney with choices they decide to make in life but atleast they will get to make that choice sounds like crap to me

http://msn.com HIllary Kessler

I feel that if the family is willing to be the donor for their own child, then they shouldn’t be denied that. As a parent you will go to the end of the earth to do what is needed to help your child and shouldn’t be denied helping in what ever capacity you are able. Without knowing the full story it is impossible to be completely one sided. I may not agree or like the hospitals decision to play god or deny a family their childs right to life, but as an outsider without knowing the family or child, I have to give some respect to the difficult decisions the hospitals have to make and pray that in this case it goes much further then what we are able to see and read! My heart goes out to this family and child!

Mustangtali

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